Sunday, June 28, 2009
Our Children's Hospital had a NICU reunion party. Apparently this is an annual event.
I wasn't really sure what to expect (to be honest, I was pretty sure it was just that they were planning on hitting us up for donations or something ... i'm cynical like that), but I'm glad we went.
But it was weird. I kept thinking "this is the room where nurses put a bow in Emma's hair before I did" and "this is the hallway we wheel Emma down for surgery" and "this is the room where we learned how to use our feeding pump" and "this is the hallway I ran down crying because I had to leave Emma to go pick up Charlie before he got to hold her on our couch" and "this is where the nurse looked at me cross-eyed when I asked about her heart defect" and "this is the room where I first heard of Cornelia de Lange"
I felt like I had aged about 10 years since then.
I felt stronger, wiser, softer, empowered, more humble, and very proud of the smiling little girl in my arms.
We got to see Emma's primary nurse and give her a big hug, and we hugged and cried with the mom and little girl who was Emma's roommate for the last 3 weeks of her stay.
I guess I sat down to reflect and process this but I can't really get the emotions into words. I think it's just an experience unlike any other and it can't be explained.
So let me just say this:
Praise God for our Children's Hospital. They did/do such an AMAZING job of making a place that should be SO sad be filled with joy wherever possible.
And GOD BLESS NICU NURSES. These wonderful people took care of my baby girl before me. I am so grateful.
Friday, June 26, 2009
Wednesday, June 24, 2009
Monday, June 22, 2009
Emma's doing great with the hearing aid. There are still some issues to be worked out (mostly the whistling when she's down on the floor), but I actually think she's enjoying hearing things. She's finally enjoying books, and she'll get really focused on a toy that makes noise and before she knows it, she'll have sat by herself for a couple of seconds!
oh, and charlie's here, too :)
I don't think that's a tough statement for anyone, right? I mean, if you have kids, remember when they were little? I'm POSITIVE my husband and I are not the only couple who had stupid fights when our first was a tiny newborn about things as little as how to change a diaper and as big as when to move the baby into his own room. And what new hormonal Mommy doesn't have the "you're not helping me enough but when you do help you're not doing it exactly MY way!" emotions?
Which, I imagine, makes it hard for Daddies, too. "You want me to help, but all you do is tell me I'm doing it wrong, so where's my motivation to help?" Right?
And I was really prepared for Emma's situation to be this times a million. I mean, if we fought over how to do the diapers, how on earth were we going to handle that PLUS a feeding tube?
And not that there haven't been those moments.
Not that it's not hard.
But last week Josh blew me away.
You remember last Thursday when the wheels kind of fell off the wagon for me? I had such high hopes for the hearing aid (because now Emma was going to laugh at my jokes? not sure ...). It was really hard for me to see her hate it.
OF COURSE it's an adjustment for her, but I lost it.
So this weekend, Josh struggled through the hard part. He put her headband on whenever she was awake and snuggled her while she cried about it being on until she forgot why she was crying and then sat and talked to her with it on.
I'm SO lucky. I didn't have to pester him, he took the bull by the horns and did it.
And last night was AWESOME! She smiled at me for the first time when she was wearing it. She wore it for over an hour and I got to sit with her and read books and sing to her and she giggled.
For lots of little reasons, Josh had a rough day yesterday. Our internet was being irritating, things like that. And we didn't really get to do any Father's Day stuff (besides order pizza for the greasy pizza joint he loves). So I think he went to bed feeling pretty down
And I was at the top of my roller coaster ... thanks to his hard work ...
So I just want to make sure that I once again publicly state that my husband rocks! He does what's best for his family and doesn't stop when the kids are in bed. I so appreciate you, baby!!!
Happy Father's Day
Friday, June 19, 2009
Thursday, June 18, 2009
We met with the audiologist from our school district today. She was the one who originally did that test with Emma where she blew loud noises at her and Emma didn't react and it made me sad? Anyway, the school district has a BAHA hearing aid that we are going to try (as opposed to spending money we don't have to get our own!).
It's kind of cool ... the technology, anyway. If you plug your ears and have someone stick this on your head and then talk, it's like you can hear, but without your ears ... it's an odd thing.
But since it's "bone vibration" technology (and really supposed to be implanted, which of course we're not doing), it needs to be held tight against her skull for it to work.
So there's this bright red stretchy sport band thing ... and her hair ... and she HATES it!
But once we got it on, she does seem to be "attending" more to things that make sounds, I guess. It's not the night and day difference I was hoping for, and I think there are a couple of reasons for that:
1) She hates it. It needs to press down on her head. The whole time she had it on this afternoon she never once smiled and gave me this "I'm only tolerating you" look anytime I tried to get a smile.
2) She can't have down time when she has it on. You know how hearing aides whistle when you hold them loose in your fist? If I put her down on the floor on her back the aid whistles and she screams. And she really actually prefers tummy time these days anyway (she loves getting up on all fours and rolling and turning all around), so I usually do that for down time except with the head band on, rolling around causes this tight band to fall down across her eyes. Which, again, she hates.
3) The audiologist is no longer convinced her hearing is as bad as originally thought. Here's the good/confusing news for the day: Before we got the hearing aid, we tried that sound booth again, and this time when music played from the right, Emma looked over at it! And the audiologist was successful in startling her at 50 dB, which is the level of conversational speech! I was overjoyed! But what do we do now? It was just last week that Emma DIDN'T react to sound at our ENT's audiologist ...
So Emma wore her hearing aid after lunch and we read a book with Charlie (who was still VERY wound up about the beeping smoke alarm and therefore acting very TWO), and she did seem to focus more during reading time than she usually does, but every once in awhile she would turn her head and the hearing aid would whistle.
And I started to get stressed
And Charlie picked up on that
And the afternoon went down hill from there
Wheels fell off the wagon, shall we say?
But after one of those phone calls stay-at-home-mom's-husbands hate to get ... ahem ...
I feel better now
I suppose it's all a work in progress, right?
Wednesday, June 17, 2009
Friday, June 12, 2009
(if you're looking for any emotional depth in this post, you're not going to find it! :))
With Emma getting a hearing aide next week that needs a band to hold it on (same technology as an implant but we're obviously not implanting it, so she's going to have a REALLY stylish sports band around her head for awhile), I've been thinking about different hair styles for the girl. What do you think?
Tuesday, June 9, 2009
Which I'm actually pretty ok with.
Everyone we talk to says our ENT is the best in the midwest and one of the best in the nation, so I trust him.
But Emma still can't hear, so we're exploring other options.
And I'm going to need new hair accessories for my little girl!
Our audiologist still thinks that her test results are consistent with loss due to fluid in Emma's ears (conductive hearing loss - tymp test was flat), which means her inner ear is just fine. So she feels the best amplification for Emma right now is something called a BAHA. It's not a typical hearing aide that goes in the ear. It goes on the bony part of her skull right behind her ear and it vibrates the bone (not nearly as weird as it sounds) to get the sound to go into her inner ear, bypassing the middle ear which is still full of fluid.
From the medical journals I've been reading lately (KIDDING - it was on an episode of House), I think this is the same idea as an implant? At least I know that this device can be implanted into children's skulls, but obviously we won't be doing that with Emma as they are still hopeful that this problem is temporary. But it doesn't hook on to the ear, so she'll be sporting headbands for awhile :)
I'm so excited to get Emma to hear!
And now about the palate:
Emma has a cleft palate but her doc says it's pretty small. She'll need a "very simple" surgery to close it, but no dental or orthodontic work. Emma's doc isn't in a big hurry to get that done. He says the big factor will be speech. Dr S feels that palates should be closed when kids start to babble so they don't get into bad habits in terms of speech (say dadadadadada and feel where your tongue goes). So he'll see her in 6 months unless she starts babbling before then and then he'll get her in to close her cleft as soon as possible.
But on the bright side with this, Emma is REALLY showing interest in food! I spoon-fed her formula last night and she loved it. So I got permission from Dr S to try rice cereal and applesauce and such. He feels that as long as we practice eating lots and keep it fun for her, we're not slowing anything down in this dept by waiting awhile on the palate repair.
I asked if we could try to do the two surgeries at once. He said maybe, that it all depends on Emma's development. He doesn't want to wait too long on the palate repair and interrupt what speech she may gain, but if her speech is delayed (which we're assuming it will be with CdLS), then maybe the two surgeries could be at the same time. We'll just have to wait and see how Emma grows and develops.
We're waiting to get the aides cleared with our insurance company and then I'm super excited to post good news about Emma's hearing.
Thanks, everyone, for your prayers!
Monday, June 8, 2009
Anyway, here's another one :)
Tomorrow we have another appointment with Emma's ENT. I think this is going to be a big decision-making appointment (although I've been wrong before and it could very well be a wait-and-see appointment) ...
Hopefully we'll get a timeline about when her palate can be fixed and when/if we can get tubes in her ears. Hopefully we can get her hearing soon. hope hope hope :)
Please pray God's will be done? Please pray that I will not put too much hope in whatever's going to happen tomorrow. I'm terrified of surgery for her but I REALLY want her to hear.
Thanks for being there for me to ask for prayer, I appreciate you!
Sunday, June 7, 2009
There was a sandbox that had a snort. Enough said.
Nana and Charlie checkin' out the fishes
Hmmm, this sandy beach needs some rocks....
The boy had an "ok" time....
"You see, Mommy, you throw like this...."
"I love you Charlie!"
Back to the snort
Gotta bring the chair to the fire pit by the snort
Look baby Emma, a snort!
Ah, the wonderful game of throw two balls tied together on a string randomly at anyone and anything
Then it was off the show Daddy how the paddle boat works
Then Mommy decided to go on her own to explore the world. Really, these pics are only here cause Becky doesn't want them to be.